Gareth

1998 Three Years On & Today
An Update on Gareth Howard
Sheffield's First Implant Recipient

In June 1995 when Gareth, then 16 years old, became the first patient in Sheffield and only the second in the Country to be implanted with the Vagus Nerve Stimulator no one knew just what the effects would be.
Having been on a downward spiral for years, with his seizures becoming more frequent and having to spend more and more time as an in-patient. We knew we had nothing to lose by allowing Gareth to undergo the surgery for the device to be implanted; we possibly had everything to gain. For years we had stood helplessly by watching him suffer his daily seizures, feeling inadequate at not being able to make them stop. We gave him our love and support, words of re-assurance and our time, often at the expense of every other member of the family.

Times have now changed; Gareth now 19yrs has a life of his own, more independence than he's ever had and a confidence that has allowed him to make friends. He has a quality of life that was once only a dream. We always believed that Gareth had the potential to do well even when some doctors had written him off. It was a case of finding the right key to unlock him. We firmly believe this key was the Vagus Nerve Stimulator.

In the last three years we have seen Gareth go from strength to strength, not only in his achievements but also in his ability to adapt to being a different person. He no longer regards himself as a patient, one who is totally reliant on others; he has his own independence brought about by the development in his confidence. We accept that this new found freedom and confidence is because he is no longer frightened about suffering seizures, for the most part he is seizure free, and with the decline in seizures his ability to learn has improved and he is able to retain what he has learnt. Understanding, communication, education all sadly lacking a few years ago are blossoming now and so is Gareth, better late than never. It has not been plain sailing and we do not want any one to think that this was a miraculous change. There has been set backs, even injuries, times when we had doubts but we have to admire our sons resilience to overcome the setbacks. Within six months of having the device fitted Gareth had gone seizure free, this was great for us but it left him in some ways with out the crutch that had always been there for him. This was when he needed to look at himself in a different light, no longer totally dependent on others, responsible for his own actions.

This seizure free period lasted for nearly a year and then a period of minor seizures started to occur. Some absences, some drop type seizures, lasting only seconds, but the drop type seizures were putting him down hard, and as he always fell backwards he was sustaining bangs to the back of his head which sometimes needed stitching or gluing. A change in medication, an alteration in his programme setting, trial and error to try and alleviate the seizures, that were more of an annoyance to Gareth than a problem.
The combination of the implant and some drugs seemed to be the right choice for Gareth, but with one of his drugs there had to be a point whereby he became immune to the effects of it. In the past the drug Clobazam used to be effective for a month or so, now nearly a year had past before it became ineffective. We now needed to withdraw this drug by introducing something to take its place till such time we could re-introduce it again. This period would always be a problem for Gareth because of the frustration he felt at the absences he was experiencing.

Once back on the drug we knew he would become seizure free and so did he. This has been the way over the last three years; long periods of seizure free followed by episodes of absences and drop seizures but no hospitalisation. We worked it out once that in the three years prior to Gareth's operation he had spent a total of eighteen months as an in-patient, since the operation he has not spent one night in hospital. This in its self is one of the biggest bonuses. The disruption it used to cause the family, when one or the other of us was at the hospital with him, and how our youngest son suffered albeit unintentionally because of it.

Gareth's achievements are non-stop; he goes from strength to strength. Medals in gold, silver and bronze in a number of sporting events through the inter-college games. The surprise being javelin and shot putt, only because Gareth is left handed and the leads to his implant are situated on the left side of his neck, but it has not stopped him doing the things he has always wanted to do and has never been able to. He is now the captain of the ten pin-bowling team, plays in regular pool matches and is an active member in the local karate club, already passing his first and second grading and going for his third grading soon. Trips out to pop concerts, the cinema and all the other things one would expect a teenager to be doing are all now a reality for him. One of his greatest achievements was to be part of his college team that went to Portsmouth for the Special Olympics and although he did not come in the medals, taking part made us very proud of him.

In October he will have been at his college in Grimsby for three years and the time will have come for him to move on. We know he still has the ability to grow and improve and so we hope that we will be able to fulfil his needs and give him the encouragement he needs to develop his newfound skills even further. We cannot complain, our lives have been totally changed through Gareth and for the better. There has been many a time when I personally have not always liked my son, I have never stopped loving him but in the past his mood swings aggressive behaviour and our inability to understand him, which led to further frustrations, all made life very difficult. He is now such a different person I have to get to know him all over again and I actually look forward to having him home for the holidays. Just as he has had to adjust so have we, where as we were always there for him and he needed us, it has now changed. We are still there to support him and love him but because of his independence and confidence, which is growing daily, he no longer depends on us in quite the same way.

We believe there is still more to come as every day brings new opportunities and experiences, we are never too old to learn and as Gareth develops further we are safe in the belief we have tried to do our best for him.
We gave him the chance; he has taken that and built upon it.

It is now 2007 and Gareth has had his generator replaced three times. Although he is not totally seizure free and still on some medication his quality of life continues to improve. The odd seizure every other month is nothing to how things were twelve years ago.